Advancing Action, 2020: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers


September 24, 2020

Better Data Are Needed to Assess State LTSS System Performance

Data gaps and data quality issues make it difficult to completely and comprehensively measure LTSS system performance. Improving consistent state-level data collection is a critical need, particularly in the domains of quality of life and quality of care. The main idea of a Scorecard is that measurement, tracking, transparency, and accountability are essential to sustained performance. Gaps in data are not just gaps in measurement: they will eventually manifest as gaps in system performance as well.

LTSS quality remains the most significant and persistent data gap in the Scorecard. This gap and others in the Quality of Life and Quality of Care dimension are so significant that they are reflected in the Scorecard’s core structure. The entire quality dimension is given only half weight in terms of assessing overall LTSS system performance, not because it is any less important, but because we consider it to be incomplete due to a lack of available data to measure multiple important aspects of quality of life and quality of care in institutional and community based settings.

The United States spent $235 billion in 2017 on LTSS services, and increasingly those services are delivered in home and community-based settings. This positive development aligns with people’s stated values and preferences for remaining in the community. However, the lack of comparable sources of data limits cross-state comparisons and national progress.

Absent an accepted nationwide standard to measure HCBS quality, this Scorecard has included—for the first time—a measurement on cross-state benchmarking capacity. This measurement is not a substitute for HCBS quality outcome measures. Instead, it measures a state’s potential capacity to learn from cross-state comparisons and emerging practices—a first step in advancing quality outcomes.

Major Progress on HCBS Spending Proves Progress Is Achievable

Nearly a quarter of states achieved a major milestone on LTSS balanced spending and now devote half or more of their Medicaid LTSS spending to HCBS (for older adults and people with physical disabilities). This achievement was unimaginable just nine years ago, when the 2011 Scorecard reported that the average proportion of spending nationwide was just 37 percent for HCBS. 

The dramatic shift, especially among higher-performing states, shows that progress is achievable when states collect data, measure and compare progress, and galvanize support among the public and private sectors.

High Performance Does Not Mean High Cost

High-performing LTSS systems that efficiently leverage the private and public sectors can be affordable and effective. For example, when family caregivers, who provide the largest share of help, are well supported with resources, care options, and workplace flexibility, they are better positioned to care for close family and friends and keep those individuals out of costly nursing homes. This in turn helps individuals preserve their resources and delay the need for public assistance and Medicaid.

Supporting family caregivers also has economic benefits. Most of the 41 million family caregivers in the United States are employed in the workforce.19 A strong LTSS system is critical to making sure those caregivers can continue to fully participate in the workforce and contribute to the local economy.

Implementation Matters

Effective implementation requires coordination across different sectors. This is particularly true when public policy solutions are designed to influence private-sector action.

The CARE Act, for example—which sets standards and training requirements during a hospital stay—is most effective when hospitals commit to preparing their staff for working with family caregivers as members of their care team as well as helping inform the public of the related benefits and building trust with patients and families during a hospitalization.

Similarly, flexible workplace policies depend on employers for effective implementation. While states and localities can enact various policies, the ultimate test of performance is not just passing a law but ensuring that working caregivers are aware of those benefits and can easily access them.

Transportation Is a Major Need

This year, the Scorecard features just one transportation policy because of the lack of reliable data to evaluate transportation needs and opportunities across all states. Having only one transportation policy in this Scorecard does not minimize the important role transportation plays in LTSS systems. On the contrary, stakeholders at all levels should learn from, scale, and replicate emerging practices so communities can more systemically meet the transportation needs of older people and adults with disabilities in the community.

Adequate transportation services make it possible for individuals to fully engage in the community and stay healthy. The lack of transportation in some communities makes it more difficult for individuals to get to doctor appointments, shop for groceries and other basic necessities, attend religious services, and participate in social events. Individuals who are cut off from communities and interactions can feel socially isolated, impacting their health and well-being.

“About 40 percent of caregivers spend at least five hours a week providing or arranging transport.”

Source: AARP, “Transportation: What Caregivers Need to Know,” AARP, Washington, DC, January 17, 2020,

Significant and Widespread Performance Improvement across Two Dimensions—Choice of Setting and Provider, and Effective Transitions—Is Needed to Advance Person-Centered Care

The Effective Transitions dimension considers whether consumers within a system can meaningfully exercise their preferences on how and where to receive care. It is not uncommon for people who need LTSS to transition between care settings. While an individual may require periods of hospitalization or a short-term nursing home stay, disruptive transitions may make it difficult or impossible for those who wish to return home to do so.

Person-centered care also requires an adequate supply of HCBS. Consumer choices are only as good as the options available in their community. When a community does not have adequate HCBS, people must choose among the options that are available, not necessarily those they prefer. This impacts people of all incomes. Inadequate HCBS supply also adds pressure on family caregivers to fill in the gaps when services are not available.

19 Reinhard et al., Valuing the Invaluable.


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